Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘pain chart’

Wonky But Happy

“Hmmm that’ a nasty dislocation to have long term, take some morphine.”

“When you next see your neurologist, if I were you I would discuss having your botox more regularly. This degree of deviation, pain and dislocation on a regular basis is not good for you.”

“Wow. Ehlers-Danlos, and Dystonia. You couldn’t have asked for a worse combination of conditions there.”

“Are you sure you don’t want to go the hospital? I’m sure the A&E department will listen to you this time. I’ll even write you a note.”

These four word-for-word quotes from different health professionals give you an insight into the last week and a half of my life. My botox has worn off a couple of weeks ahead of schedule around my jaw, the rest is still working well, so overall I’m pretty happy. However this does mean I’ve been experiencing regular extreme spasms and dislocations in my jaw again, which in turn has an impact on my ability to talk, eat and drink.

Whilst my ability to communicate using British Sign Language is steadily improving, I took a trip to the doctors to get a prescription for some painkillers and muscle relaxants, as I’d like to eat, drink and talk in as little pain as possible. Whilst I have access to oramorph this is my last resort medication, and not something I am willing to take around my son unless it is an emergency. The doctor couldn’t quite believe the predicament I was in, let alone get his head around the fact that I did not fancy sitting for a couple of hours in my local A&E at a hospital that has repeatedly provided the wrong treatment despite direct instruction from my neurologist. I stated to him that as I don’t respond to local anaesthetic I would much rather take the painkillers and muscle relaxants at home and relocate my jaw myself when the spasm eased off. At this point I think he would have dragged me to the hospital if he could have.

We discussed at length (well I scribbled out for him what I was attempting to convey) my botox arrangement with my neurologist. It stunned him that I was willing to put up with these spasms for a further two and a half weeks. The moment was an odd one, with me not really in a great place with my distorted face, twisted neck and dislocated jaw to protest that actually I was doing great, but then he didn’t know me six years ago when I was bed bound, he didn’t even know me a week beforehand when my botox was working well, so I can see where his concern comes from.

At the time the above four quotes drove me nutty. But I know I’m easily wound up when in pain, so I can’t say that I am surprised. In reflection, whilst my jaw still is causing me significant pain from my current dislocation I can see my progress in pain management and self-care; which is an element I am proud to have improved on.

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